Winter has arrived , God Help us!

Yes its happened! Waking up to the first frosts of the year with frozen windscreens on the cars and a lovely white shimmer to the grass and the feel of it crunching under foot when you walk. This is the sign of the cold weather approaching and a reminder that I have to be careful when going out in the cold. Making sure I wrap up warm and keep my head covered so not to trigger the cluster attacks is usually the first action I take this time of year but for some reason the clusters are staying low.  Don’t get me wrong I am very grateful not to be dealing with severe pain first thing when I wake up but it worries me that I could be due for a large attack.

Its really strange how the cold weather has been my main trigger for the clusters for years and every time cold wind blows into my left eye or I feel a freezing cold feeling on the top of my head it would trigger a cluster attack and I would then spend the day having to deal with the pain and the constant after attacks you get when they start. Having anything up to 8 attacks per day each lasting an hour used to take it out of me. Now days they have really decreased and I am seeing 1 or 2 attacks every 3 or 4 days which is great. It would be even better if they would stop all together but I cant see that happening any time soon unless a miracle happens.

Another strange fact about the clusters is when I am out fishing. For some reason when I go fishing, and this does include cold weather, the clusters don’t seem to develop. Whether it is something to do with being able to relax or something to do with the amount of concentration I go into when I am fishing I am just grateful I don’t seem to get as many attacks when on the bank. At first I thought it has something to do with me not thinking about my illness all the time and actually concentrating on fishing and this was why they don’t develop but I have tried doing this with other activities and I don’t get the same results. I thought by keeping myself busy and not actually thinking about the clusters was the key and the reason why they don’t develop when fishing but this is not correct. As to why fishing is one of the only activities I can do with out being in pain all the time is beyond my understanding, I am just grateful I can continue some kind of sport and especially a hobby that I love so much.

This year I am dealing with a new problem now I have been fully diagnosed and after spending the entire 2017 in and out of hospital all the time. As well as the cluster attacks I also have a damaged nerve in the left side of my neck which I have mentioned before in my blog, explaining the amount of pains I get down my back on the left side and in the neck. I first thought tis was referred pain from the cluster attacks and for years I just put up with it. Now they have found out what is wrong and explained that there isn’t anything that can be done apart from a cervical nerve root block that could make me loose the feeling and movement in the left side of my body, so at the end of the day its not an option I want to take and would rather put up with the pain knowing I can continue doing things and still remain mobile. OK I know its another issue I am going to have to learn to live with and I know its a lot of pain to deal with but I do get good days as well as bad and would rather deal with the pain than loose my mobility and independence.

Even though winter is now arriving on our doorstep and the pains continue I am happy to report that my health is beginning to improve. Understanding what is wrong with me and knowing the things I can do to help myself manage the condition is half the battle. For years I didn’t know what was going on but now I see some light at the end of the tunnel. I am just praying the body continues to improve and I am able to get out a lot more than usual. it’s not healthy being stuck indoors for days on end and one reason I love to go out fishing. I find being in the open air, fresh air helps with your health and your moods. Things are starting to look good for the future and I have a few projects that I would like to get started and I am hoping that this is the start of things to come, good times ahead!

They are back... and so the beast returns.

Well its official the clusters are back. The cold weather has moved in and I am starting to feel it on the top of my head in the early hours. Then wake up at 3 am with a feeling of pressure and as soon as I open my eyes the cluster attack begins. Pressure and sharp pain shoots from behind the left upper jaw, u through my left eye causing it to close and water like someone has just turned a tap on. The pain then shoots over the left side of my head along the scar I have from where my head was split open all those years ago. It then continues into the back of the head and down the neck.  This is a full cluster attack and the pain level is so high it makes you feel sick. A sharp stinging constant pain, no matter how hard you rub the area of the pain it doesn't ease. You kneel in agony praying to god for the pain to stop, hoping it will ease with every minuet that passes.

Its horrible when a condition is so bad you actually pray for death to come and put you out of your misery. This is what clusters do to you. It makes it worst now I have damaged nerves down the left side of my body,. Instead of the cluster pain stopping in your neck, mine actually spreads right down the left side of my back The Cluster seem to aggravate the nerves in the back as badly as the nerves aggravate the clusters. Once it starts there isn’t anything you can do about it as one thing becomes painful its starts of the other. All you can do is take your injection and pray to god it aborts the cluster attack. If not you have to ride the pain for over an hour and believe me when i say that takes all of your energy.

By the end of a full cluster attack I am drained to the point I feel like I am going to pass out. All you can do is sit or lay depending on the position you end up in after thrashing about in agony for over an hour. Every muscle in your body aches and the side of your face feels numb from the pain. This always gets worst when the winter comes and the cold weather starts. I don’t know why the cold is one of my triggers but it is and there isn't much I can do other than try and prepare for when it comes. I use beanie hats to stay warm on cold days. Keeping my head warm helps stop the clusters developing but if there is a strong wind and it blows in my left eye it can also trigger an attack so I have to be so careful when going out.

I have to be thankful that I don't get any where near the amount of attacks used to get and at least I have shown some progress when it comes to managing the condition but I have to be honest it never gets any easier. It hasn’t helped I haven’t really been getting out as much as I should and not even fishing at my local lake. This has been down to the lump in the left side of my back causing so much pain and the hospital deciding I can live with the pain rather than waste the money on a cosmetic operation as they put it.  Lets hope I can get out and do some fishing soon before I start to loose my mind. Even though the cold has arrived it has still been very mild considering the weather we have had. I am hoping it will remain a mild winter this year and the attacks shouldn’t become too bad,

Although the Beast returned, there is still kindness out there!

The beast has decided to return with vengeance after giving me a break over the summer. I almost reached the full week pain free mark but missed it by one day. Now considering it used to be rare for me to see even one day with out a cluster attack I am really happy with the progress but saddened by the fact the attacks have returned in such a violent way. Since 2am this morning it has been attack after attack with me reaching a record of 6 in the morning. Now being able to abort the odd one or 2 with injections is fine but when you have to ride out the pain of the other attacks it really takes it out of you. I didn’t think I was going to be able cope this morning and had some really strange things happen that I can only put down to the nerve damage on the left side of the body.

I don’t care what anyone says , when you are experiencing strange things like electric shocks numbness, deadness and even icy cold feeling in different parts of your body for no reason , and you still know its the nerve, you STILL panic like crazy. They are horrible feelings when they come and can make life a living hell. Dropping cups of coffee because I cant feel my hand close around the cup properly. Falling over whilst trying to dress yourself in the morning as the feeling in your entire left side of the body just vanishes for a few seconds, enough to make you loose your balance.  These are only a couple of the things happening and trust me when i say its an extremely scary experience.

I was reminded that there are still good people in the world and my faith in mankind has been restored when a friend that I met through fishing, the sport I love more than anything, decided he wanted to help get me back out on the bank fishing again and has offered to help me out and even come fishing with me. He didn’t want anything in return other than me to teach him a bit about carp fishing which is something I would do anyway. Its really nice to see there are others who actually think of others first and ask nothing in return for their kindness. I thought old school attitude was dying off but it looks like its still alive in a few people. Hopefully now it wont be long and I will be back gracing the fishing banks again catching a few monsters. I really wanted to target one for Christmas this year so fingers crossed I can get my act together in time.

Another early morning wake up call to remind me of my condition.

  I have started to wonder just how much damage to my body theses clusters have caused or there is from the thing that caused the clusters in the first place. The reason behind me wondering this is the amount of problems I have been having with the left side of my body and the nerves. It just seems as time passes and I learn to deal with one thing something else comes along and starts causing me problems. I have been getting a lot of chest pains again and I assume its the hernia and the nerve both playing up at the same time but even though I know what it is it doesn’t stop me worrying all the time.

  The clusters seem to have dropped right down ever since I started to manage the pain in my neck and back. It seems like the neck was one of the major factors in setting off my clusters and why they turned chronic. Sometimes I forget just how painful clusters really are and its not until I get an early morning wake up call from the beast then it reminds me just how horrible this condition is. Again this morning the best decided to pay me a visit after being attack free for almost a full week. Its crazy how they can just appear and start from no where. The level of pain that comes with the attack is something I just can’t describe and I will never be able to manage. It really surprises me how I have managed to go this long with the condition. Not that I have much choice mind you.

  The Hiatus Hernia has also been playing up more than ever before and causing me problems when I am eating or drinking by choking me all the time. Its really annoying as it can happy at any time and more than once. All you can do is rub your chest like crazy whilst swallowing over and over again until it suddenly pops through. One of the most horrible feelings you can imagine. It worry's me that one day I wont be able to get it to pop through and then I would end up chocking. Until that happens there is nothing I can do other than make sure I take my medication and just deal with things when they happen.

  The nerve damage on the left side of my body has been causing me a lot of pain also and when I walk I am in agony. I try not to show I am in pain when I walk as I have started to get a bit fed up with people seeing me in agony and out of concern asking what’s wrong. Its not that they are doing anything wrong, far from it, its nice to see people care, but you get so fed up with explaining the same thing over and over again. Its the same thing every time I go to the hospital. It’s not like they don’t have your entire medical history on a computer in front of them but because they don’t have time to read every ones records completely you find yourself having to explain things over and over.

  I haven't really managed to get out much the last month as the pain in the back has just been too much to deal with so I haven't even managed to go fishing. I need to get back out on the bank soon as I am having fishing withdrawals so I am going to have to arrange something before I loose my mind.  It’s weird as when I am fishing it’s the only time my illness doesn’t play up and doesn’t bother me. Maybe because your mind is focused on something other than your health and the fresh air helps to relax and regenerate the body and mind. What ever is the reason it works. Fingers crossed the cold weather doesn’t come in to quick this year and i manage to get out before Christmas.

Strange things Happening!

Its starting to become very clear that i am not going to fix or get rid of the nerve problem i have in the neck not to mention the problems i am getting down the left side of my back. I was hoping that once i started treating the damaged nerves and learn to manage the pain it would get better and i would be able to cope with the problems but in fact the opposite is happening. It seems like the more time passes the worst the problems are becoming. I have now woken 3 times where i have though i had a stroke in my sleep and the entire left side of my body is dead and numb. Not being able to move half of your body when you wake up is very scary and when it takes a good 20 minuets to return the feeling its worrying. 

This is not the worst thing that happens. The scariest thing of all is not when it goes dead but when the entire left side of my body including my head suddenly freezes. When i say freeze i mean frozen! Its as though someone has put the half of you inside a freezer and you feel like its icy cold and again numb. As the cold spreads slowly over the entire left side of the body you start to panic and start rubbing your limbs vigorously to try and warm then up and get feeling back but nothing seems to help you just have to wait until it returns on its own. Even though i know its only nerve damage that's causing it it doesn't really help to calm the situation.

I am grateful that the clusters seem to be staying low at the moment and despite the weather changing and the cold returning they seem to be staying at the rate i get through the summer which is great news so far. I am just praying as the freezing winter winds start that the head remains calm and behaves itself this. i know they will get a little worst as the winter chill begins but hopefully if i manage the pain like i am doing with the neck it shouldn't be too bad this year. One thing i have found is that by managing the neck and stretching the nerve when it feels stiff and using heat when its in pain it seems to have stopped triggering the clusters. I am now wondering if it was the damaged nerves in the neck that is responsible for turning my clusters from episodic to chronic. 

The lump in my back on the lower left of my spine moved and started touching the spine and causing me even more problems and pain than i already get. The last thing i need now is something else to join in the constant torture but it has and now it looks like i have to have it removed. It was supposed to be happening the other week but there seems to be a complication so i am now waiting on some scans to come back and for the specialist to decide if its operable or not. The last thing i need right now is a another problem that they can't do anything about so am am praying they can this time. It seems to flare up and some days are really bad where i can't walk properly and other days i don't get much problem from it. When they did the initial scan to see what it was they told me it was a fatty lump. Now they don't seem to be so sure what it is. All i know is i need to get it sorted soon as i have been missing my fishing and have been unable to go out until i know whats happening. Fingers crossed it will all be sorted soon. 

Reduced attacks but still everyday pain.

Once again I have been holding back on my blog hoping for a miracle I suppose. Since I was diagnosed with the damaged nerves in the neck and back and started to understand how it was effecting me and how it aggravates my clusters, I have noticed a huge decrease in the amount of cluster attacks I get. By learning to manage the neck and back and the pain that it brings I have found that it has stopped triggering my cluster attacks on a regular basis. The worst part of it is that instead of getting a few attacks per day with the odd day pain free, I am now finding that I am getting the attacks in bouts.

When they start I don't just have the odd one or two attacks now  I get a string of them in a row. Sometimes I can have 8 or 10 attacks all in one day and then it can stop for a week or so and then start again with another bout with again a high number of attacks through the day. I don’t know why they have changed like this and maybe its just the normal coarse the attacks take but for some reason it seems like they have become stronger than before and even worst pain (if that’s at all possible). I have also noticed that I am struggling to stay on my feet all day as when I do I find myself in a lot of pain up the left side of my back.

I know the pains in the back and down the leg and across the chest are from the damaged nerves in the neck so I tend not to worry so much when the pain comes but I can’t help becoming nervous and scared when the chest pains start and I get that sharp pain over the top of my heart. I know deep down its not my heart but it still scares the living daylights out of me each time it comes. I am using gels and pain relief but this doesn't seem to touch it and I can’t take the stronger pain killers so I have to ride the pain out each time it comes. Something else I noticed also was when I have a cluster attack and have to take my medication (injection) not only does the injection stop the cluster attack in its tracks if you take it quick enough but it can also help ease the nerve pain in the back. unfortunately I can’t take them for that reason and only being allowed 2 in any 24 hour period means its not a viable solution to all the pain.

Every time I make an appointment and tell the doctors about the pain and what's going on they always refer me to cardiology thinking it can be the heart and after loads of tests they tell me its not the heart its nerve and muscle pain, then they seem to forget that's what the issue is and I don't need the heart investigating I just want to know why I am getting the pain and why it wont go away and keeps scaring me. I feel it has something to do with the Hiatus Hermia but they never seem to investigate it further to see what's causing it they just say its not the heart , all is ok and send me on my way to continue to suffer with the pain and problems.

It’s great that I am now getting more days with out cluster attacks but I have lost the pain free days altogether. I no longer get pain free days due to the back and neck always causing some kind of pain and discomfort. I am sure it is the nerves in the neck that actually caused my clusters to turn chronic. I think I would have stayed having the odd couple of attacks every 4 to 6 months if it wasn’t for the nerves in the neck becoming ultra sensitive and being damaged by something. I think the nerve pain is what was aggravating my clusters and now I am managing the nerve pain it seems to be working and the attacks have really decreased but its still way too early to tell. Winter is just around the corner along with the cold winds and low pressure so I am waiting to see if winter becomes the nightmare it usually is with the clusters.

The early morning attacks return!

Once again the early morning wake up call from the beast has begun. i don;t think it can be from cold weather as we are in the middle of summer so i can only assume it has something to do with the low pressure and bad weather we have been having or again down the the nerve on the left side of my neck playing up and aggravating the cluster attacks. There has been many times when i actually think to myself have i been miss diagnosed? are the attacks being caused by something else? and can they find it and fix it? but every time i have a full on cluster attack it convinces me that the Neurologist was right and the description of a cluster attacks matches my attack perfectly , right down to the small details such as the body bursting into sudden sweats and the left eye closing and swelling from the amount of water pouring from the eye on the side of the attack. 

The way the attacks begin rare also a clue to what they are and what is causing them. With cluster attacks the pain always starts behind the eye and just above the eye and always spreads over the top of the head. Mine are always on the left side of the head in the same place every time. I actually get 2 different types of attacks. A mild one that i put down to being caused from the nerve damage i have as the pain begins in the back of the neck and spreads up into the head, this aggravates the clusters.  Then the normal attack will start at the front of the head behind the left eye. I have found that problems with the nerves in the left side of my neck have been causing at least 50% of the cluster attacks i have been getting. The second type is the normal cluster attack that always starts behind the eye and spreads up over the top of the head into the the back of your neck like a perfect line. This attacks always comes with sweats, eye swelling, face drooping and so much pain you wish you were dead. Now that i am learning to manage the pain an the nerves in the neck with heat treatment, stretching and pain killers, even though it doesn't stop all the pain and problems i have seen a massive decrease in the amount of cluster headaches that are triggered.

This reduction means i now find myself with cluster free weeks instead of days but unfortunately not pain free due to the nerve problems. The left side of my body is in constant pain from the nerve and my lower back is always annoying me, like having tooth ache in ya lower spine. its horrible, There's not really much can be done other than a cervical nerve root block with big risks so we can';t take that option yet until it becomes so unbearable i can no longer live with it. So for now all i can do is continue practising pain management and try not to aggravate the nerves and cause more pain by doing silly things to hurt my back such as lifting heavy weights and too much movement during a day, i find i now have to pace myself. I am a lot happier now i know what is causing all the problems and am slowly learning to adjust my lifestyle to accommodate and manage the pain but i still find i am not getting out nearly as much as i should or like.

I have managed to get out fishing at least once a month so far since the start of the season. No considering i was hoping to go each weekend its a long way from what i had planned but still a lot better than previous years, there has been time where i only managed 2 fishing trips in the whole year. Not having my own transport is one of the issues as when you have damage to a nerve and have back pain its impossible to carry all the fishing gear to the lake so you need transport. This is something i need to get sorted for next year. The fishing not only helps to keep me getting out and in the fresh air but it also helps to with exercise and especially if you suffer depression as it lifts the moods. I have been lucky as i have some good friends who have all been willing to help and get me out on the bank and are willing to help me get my gear to the lake but sometimes i feel like i am asking too much of people and just try and get on with things even if it leaves me suffering in agonising pain for an hour afterwards, my own stupid pride!